The first few nights after being told that my chemo had failed were a horrible blur. I suppose it wasn’t too far off how I felt the first few nights after Leo died, where you wake up and realize all over again that the nightmare is actually your real life.
Family & friends
Mom and Dad flew over the day after The Bad News and my brother Justin and his wife started planning to come, too. They are here now and my niece says my name which is so sweet. She gives me cuddles and kisses! It is such a treat to be surrounded by people who love me. The best medicine, really. I’ve got a few more visitors lined up and it gives me something to look forward to.
I’ve always been someone who can handle most things without meds. I rarely took pain pills for headaches. But now, though, I accept that sometimes I need the good stuff. Class A drugs for a Class A girl!
I have a prescription for Diazepam (Valium) which helps when I have invasive thoughts during the day. I also have prescription sleeping tablets to help me get off to sleep at night which is when those thoughts start to swirl around. I have some morphine for the liver capsule and shoulder pain I’ve been having following chemo. Finally, I have prescription nutrition drinks in case I can’t face eating.
Most of that stuff is good to have on hand, just in case. I’ve not needed much of anything, but just knowing that I have relief if I need it has really helped my brain.
Nutrition & Exercise
Long gone are my Big Mac days. I’ve cut out red meat, dairy and added sugar in a bid to starve the cancer cells. Instead, I am eating lots of raw fruit & vegetables, nut butters and organic chicken & eggs. I do cheat occasionally (you have to live), but on the whole I’m packing in the nutrition.
I’m also walking everywhere, and walking fast. I don’t have time to spare! Following on from my nine mile walk to Bath (in which I’ve raised over £7000 for Bowel Cancer UK – almost £5K in the first four days!), I’ve decided to keep doing it. This decision may cost me my big toenails but it is so crucial that I keep exercising. It is another wonder drug and helps with all of my side effects!
You are more than welcome to join me on my long canal cape walks! I’ll be doing them so long as I am able.
Singing in the bath
One of my favourite ways to calm down is to throw on a playlist and belt out some of my favourite tunes. I did this after Leo died and it really helped then, too. I feel sorry for my family who have to hear me singing the same songs over and over again, but at least our bathroom has a door again!
There’s a coffee slash pet shop in town called Doghouse and I love going in there for a coconut milk latte and a chat with my friends. It feels so refreshingly normal! We jokingly call it “Team Amy HQ.” The staff are lovely and the regulars bring their dogs in so I get plenty of cuddles alongside my caffeine.
Press & Media Stuff
I did a bunch of news articles a few weeks back. I did an interview with the Press Association which got into a few national papers which was exciting. I’ve eased off to spend some time unwinding with my family but I do plan on kicking it up a notch again. I really want to go on This Morning and hang out with Holly Willoughby! Most of all, I want people to know about poop and to try and improve the system which failed me at several critical points.
This sort of video really helps me to chill out, and I’m not joking!
I read a lot of medical papers now. For someone who hated biology, I actually know a fair amount about my insides and what they do and how best to help them. I am researching private, liver-targeted treatments in case I get a window of opportunity to try one and also searching for a clinical trial that may benefit me. I am learning more and more about the drugs that I’m taking and exactly what they do to cancer cells (and hoping my cancer is not outsmarting it!). I know so much more now than I did in April. Knowledge is power!
Making chemo a fun time
Since I have to be there biweekly, I try to make chemo a good time. This week, I stuck on a giant temporary tattoo and wore unicorn leggings!
Advocating for quality of life stuff
My oncologist is a fan of PICC lines. Mine has been great, but knowing that I’ll be on treatment forever has had me insist on having a portacath slipped under my skin. Of all the scary things I discussed with my oncologist two weeks ago, thinking of having a shower in my new bathroom made me well up with tears. He understood the importance of it, wrote a referral and I’ve already had my surgery! It means that once I’m healed up, I’ll be able to submerge myself in the bath, take showers, swim and go to the spa. Water therapy. I can’t wait!
Taking control of what I can
I can’t control my cancer, but I can control everything around it: my relationships, my attitude, my therapeutic treatments, my makeup, my clothes, my hair, how I spend my time, what I eat, etc.
Cancer has brought out this eccentric side of me which was probably always there but kept under wraps, afraid of what society would think of me. I don’t have that fear anymore. I’m free to be me and do what I need to do in order to cope, so I’m latching on to whatever helps.
Accepting that I’m not ultimately in control
This has been easier said than done. It’s frustrating that the one thing that would help all of the pain my husband and family are dealing with is the one thing that I can’t change: my cancer.
I’m blessed to have so many people praying for me and hoping I get my miracle, but ultimately we’re not in control. To admit and accept that has been a slow process: devastating, but also quite liberating.
Thanks for reading.